January-March stuff #lupus

I’ve had some testing done and some medication changes so I figured I’d write about it. I’ve been really struggling with brain fog lately, so enjoy my word soup.

Back in October or November, I started having an itchy patch on my right nipple. The skin became hard and I was quite worried about it. I already knew from a previous  ultrasound that I have dense breast tissue, which is painful and doesn’t have a treatment. But I was alarmed by the new symptom along with an enlarged sore lymph node on my left underarm. I requested another ultrasound where they looked at my breasts, and also my underarms. The ultrasound didn’t show anything unusual but I wasn’t satisfied with that test alone. I pushed for a mammogram, which they denied at first because I am under 40, which begins my rant:

With all the breast cancer awareness events and t-shirts and pink ribbons everywhere all the time, why do I have to beg for a mammogram? Because 26-year-olds don’t get breast cancer? They gave me such a hard time about it, and then when I finally went to get it, they told me “Don’t come back until you’re 40.”

My symptoms really scared me, they lined up with Paget’s Disease. I just had to know for sure that everything was normal. And it was, aside from finding out that I have painful dense breast tissue growing all the way up into my armpit area. Now I know why I hurt so much there all the time. And the lymph node is nothing, just an enlarged angry lymph node, probably from the lupus.

Dense breast tissue does raise your risk for breast cancer and I will be pushing for another mammogram when I feel like I need to, regardless of what a snooty desk clerk tells me in between smacking her gum and biting her fake fingernails. I urge anyone else who feels something isn’t right to do the same.

So, that’s it. Just sore boobs. Oh goodie.

I recently went to get a second opinion on my lupus treatments and was told I was being treated “conservatively” and the doctor decided it was worth a shot to raise my humira dose from twice a month to once a week. I’ve been doing weekly injections for a little over a month. I think I feel more tired. My pain levels are the same, they might even be worse. My elbows have been pretty bad, and recently my upper back and neck. I have the chills during the day, and I get really hot at night. I think I had that before but it seems a little worse and a little more predictable now. My lower GI pain is about the same. I seem a bit rashy lately. I did notice that being in the sun doesn’t seem to make me sick right away like it usually does, but also it’s not quite summer yet. It’s only been a short time since I increased the dose, so we’ll see what happens when more time goes by.

I went to see a new GI doctor that was recommended to me by my other new doctor. He said that my other GI was a “procedurist” and that this new doctor was good with motility issues. She diagnosed me with “functional dyspepsia” and explained that there are too many nerve signals being fired off between my brain and my stomach. She is treating me with amitriptyline. It’s an antidepressant but in small doses doesn’t alter mood and can help stop some of the excessive nerve signals. I started off at 10mg about a month ago and increased it to 20mg a few days ago. So far I feel a lot less of the gnawing gastritis pain at night which has been nice because I was losing so much sleep. I don’t really think much else has changed but I have to give the 20mg a chance to work. I’m really hoping eventually I will be able to eat some regular foods again. I’m still on the bland diet and it really sucks.

I am still having trouble swallowing, and clearing my throat all the time. I am still accidentally inhaling food, and feeling full too quickly.

I’m giving mindfulness a try. In my interpretation of it, it’s just teaching yourself how to give your mind a break so that you are not overloaded with stress. Some people practice traditional meditation but that can be difficult and uncomfortable for people with chronic pain and focus issues. So far I am figuring out when I need these mind breaks, and doing something tactile and completely focusing on that one activity. I was told to try something like petting my cat or rubbing lotion into my hands. It’s really hard to do it and to focus on it without thinking about actually “being mindful”. My brain likes to go 100 miles per hour sometimes. I think between those two activities, hand lotion one seems to be easier to focus on, since it feels more sensory (but without sensory-overload). Some people concentrate on their breathing to be mindful, but breathing exercises usually stress me out. And my hands get dry anyway, so the hand lotion is a good choice for the time being. I hope I can get a grasp on it and take my stress levels down a bit. Most of my stress is from pain which is something you can’t separate yourself from, but if I can teach myself not to focus on it for even a short time I think it could help.

I think I experience mindfulness when I listen to music sometimes, because I become completely engrossed in it. But music isn’t always appropriate when you feel like you are having sensory overload, and lately I’ve had more problems with feeling “sensed-out” so it hasn’t been a good solution on some days. I started to feel like music was giving me anxiety and I’ve never experienced that before, and it sucks because it has always been a good distraction throughout my pain journey.

I wonder if daydreaming counts as mindfulness since I do it a lot and completely forget where I am, ha.

I still have costochondritis. I can’t really wear a bra much anymore. I have to shower before bed because my rib cage is so stiff. I’ve been putting voltaren on the area for about a year now. I don’t really feel like it does much, to be honest. I feel constricted in my chest all the time. And when I sit in certain positions it gets worse. The hiatal hernia probably doesn’t help either. I sat on the couch for a bit recently and ended up feeling like someone was tearing a hole in my diaphragm for a few days after. I have to sit on more firm surfaces, but at the same time I have to have a cushion under my bony ass or else it goes numb. It’s always a contradiction with this disease. I miss being able to sit on my couch. The problems I have with my body are stupid and frustrating.

My brain fog seems to get worse every year. I am looking into treatments for that and trying to decide if I want to put myself through expensive grueling 6 hour testing or not, so they can tell me, “Yup, you have brain fog.” We’ll see.

I had a sore throat for like a month for no reason, that was fun. Thanks, Still’s Disease.

I suppose that’s about it

ttfn

 

 

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Are you a little bit better? #lupus

My rheumatologist asked me an interesting question a few months ago. “Since last year, would you say you are 40% better (since starting Humira)?”

It was a hard question to answer. I feel like yes, some things are 40% better. But I am now dealing with new things, and some other things are worse. So to me, it depends on what symptom you’re talking about. I feel like I’ve traded awful symptoms for other awful symptoms, which doesn’t much feel like relief.

Reacting my frustration, he went on to say that when a person feels a little better, they start to want to feel a whole lot better, and I agreed, although I felt like that wasn’t quite what I was feeling.

I’ve thought about this conversation for a while, because I haven’t been able to figure out how to put into words how I am feeling, but in the middle of the night a few nights ago, I figured out what has been bothering me.

Biologics like Humira are really hard to obtain. Insurances don’t want to approve them because they are new and expensive. They often subject a patient to step therapy, which is just trying cheaper medications that probably won’t help first, before approving a biologic. There is so much time that gets wasted while this goes on. So many side effects that are dealt with, without much relief. A lot of waiting for something better. There are a lot of hours spent playing phone tag and fighting with the insurance. Even if insurance eventually runs out of reasons to deny a biologic, they really drag their feet about it. Phone calls are “missed”. Faxes and paperwork are “lost”. There’s always some asshole who can’t spell Lupus, who doesn’t have one iota of medical knowledge telling you no. Then, if you are lucky enough to have jumped through enough hoops, you’ll get to schedule a delivery. And you’ll cross your fingers that you don’t have to chase down the delivery man because some of them can’t be bothered to get out of the truck when they realize your apartment has a gate.

And you cross your fingers that this is even the right medication for you, while you wait for a few months to see if it even works.

With all of the stress and waiting and fighting to finally get the medication in your possession, you would think it was the holy grail of treatments. It must be good if it’s this hard to get.

That is what has been bothering me. It took a lot of fighting to get here and I just feel like the amount of relief I’ve felt so far doesn’t equal out. It’s just been a very “this is it?” feeling.

 

February #lupus #ra #humira #spoonie

February was a long month. It seemed like my family and I were sick for weeks. My brother came down with the flu on Superbowl Sunday. Everyone’s been sick since then. We had a sudden heat wave and I think it just made everybody sicker. I had a sore throat for weeks, and then finally last week I got a cold. Once I actually got sick, it wasn’t that bad. But it took so long just to come down with it. I felt awful for a long time. I’m doing better now but my sinuses are still stuffy.

I had to take my Humira a few days late a couple times this month just to make sure I was well enough to take it. It ended up working out, but it’s kind of stressful when you’re not sure if you’re sick or not. I did my shot yesterday. I’m tired today but not sure if it’s from the shot or just from everything.

I’m not sleeping well. I’m pretty exhausted. Sometimes in the middle of the day I’m so tired I just want to cry. I would take a nap, but I haven’t been able to sleep at any time of day. I’ve talked before about my breathing problems at night. This month it’s been really bad. I feel like there is something wrong with my diaphragm. When I lie down I feel some resistance in that area, like it collapses or closes up or something. Right when I’m about to fall asleep I jerk awake gasping, and I can hear it. It’s not wheezing. It seems different. Sometimes I have a night where it doesn’t really bother me. Those seem to be the days where I didn’t take any medications that cause drowsiness or relax muscles. So now I’m afraid to take anything like that anymore, because I want so badly to just sleep. Last night was a little better than usual but I was still up pretty early because of my usual gastritis pain that hits me around 5am. If I fall asleep around midnight and wake up at 5, that’s actually a good night for me. Sometimes I go to bed and I’m not really able to fall asleep til 2-3 because of the breathing problems, and the quality of sleep I do get is pretty shitty, and I wake up all jumpy and jittery.

My joints hurt a lot this week. Particularly my lower spine, hips, knees, and the bones in my feet. I’m not really sure why. Sometimes when I get menstrual cramps, it’s like the pain goes all the way down to my feet.

I’ve had a lot of nose bleeds. I had a week this month where I was having 2 a day. I wasn’t gushing all over the floor but I still needed to keep tissues around. I chalked it up to to the Flonase that I had been using for some nasal swelling. I prefer nasacort since it doesn’t smell like flowers and it doesn’t give me nosebleeds.

The last 2 doctor appointments I’ve been to were complete shit. They didn’t listen to me at all. Sometimes a doctor’s only goal is to bill your insurance. I went to the gynecologist for a “Well Woman” visit which is free for everyone because of Obamacare. I had a few things concerning chronic pain in that area that I tried to talk to her about, things I thought she might be concerned about too, but she seemed more interested in hurrying me along, since it was my free visit. The pain I have is abnormal and uncomfortable daily and I was hoping to get some help or at least an explanation.She basically just told me not to wear jeans. And I’m just thinking “Um, it’s not normal for jeans to make your ladyparts hurt to begin with.” I thought she might check my hormone levels since an imbalance could cause pain sometimes. Nope. I also talked about progesterone to stop my periods since they make my lupus worse every month, and she really wasn’t interested in providing me with extra information. I asked her if she had some of those medication brochures and she told me to google it.

The more I thought about that appointment, the more pissed it made me. I felt a bit violated and unheard at the same time.

Doctors hate Obamacare and are prejudiced against any service they have to provide under it. She just wanted to do the minimum and get me out of her office.

I would happily talk about the other appointment I went to openly but [insert dysfunctional relative here] reads my blog and I’d sooner share things with strangers at the bus stop. I don’t usually talk about the harassment out of fear of retaliation.

It was just another situation where I was disappointed by a doctor with whom I shared things in confidence, and now I have to see another doctor and start all over again.

Today I was supposed to go see a neurologist. I made the appointment on speakerphone with my mom 2 months ago for today, March 1st. I put it right into the calendar on my iPod. I can only make appointments on Tuesday or Thursday, and I go mostly on Tuesdays. The staff must have forgotten that Monday was leap day, because for some reason I was scheduled on Monday. I know for sure it was supposed to be March 1st. I remember specifically asking for it since it was a Tuesday. So now they won’t see me at all since I was a “no show”, even though it was their mistake. They’d never admit to it in a billion years and in the mean time gave me attitude like I was too lazy to show up yesterday. They told me they tried to call me once to confirm the appointment on Friday but that there was “something wrong with my phone”. My mom called to confirm the appointment this morning since I never got a call, and it’s a good thing she did, or else we would have driven 3 hours round trip for nothing.

While I don’t really want to be at a doctor’s office where the staff doesn’t know how to read a calendar, I was disappointed that I didn’t get to see a doctor today. I really want to talk to someone and hopefully figure out my breathing problems. I’m scheduled to see a new neuro but their first available appointment is at the end of April. I am hoping that if they get a cancellation, they can get me in sooner.

At the same time I am a bit disenchanted with going to doctors in general. I feel like I’m not being heard or helped. I’m not expecting a magic wand but maybe a bit more understanding would be nice. Whenever I have a new troubling symptom I feel like it takes years to figure out what it is, because I have to go around and see all the specialists all over again, only to have most of them shrug and go “it’s probably the lupus”. Well, no shit sherlock, but I’m miserable, so fix it.

For example, I’ve had heart palpitations and high blood pressure for years. I still don’t really know why. It’s probably vascular. But for me to finally know that it’s “probably vascular” took me years of “it sounds like anxiety” and various tests coming up normal. I had to beg my cardiologist to give me medication for it. My resting BP was 140/100 and it was giving me terrible headaches, shortness of breath and dizziness. They were perfectly OK with letting me go on like that because it’s “not that high” and “it would take ten years to do damage”. It’s still a problem but I’m a bit more comfortable now. I have a handful of symptoms like this that make daily living really hard and they all just kind of shrug at me, and my nighttime breathing problems is one of them.

Also my bladder problems… I don’t remember if I already wrote about this or not, but I was able to figure out that some of my bladder irritation is probably an allergic reaction to salmon. I was eating it a lot since my diet is pretty limited, but I realized when I hadn’t eaten it in a while, I wasn’t having the burning or frequency nearly as much anymore. I still pee a lot but I’m in a lot less pain now. But I’ve been dealing with the bladder irritation since I did the Rituxan treatment in 2014 (which can happen with some drugs) and it’s been terribly uncomfortable.

Sometimes I get treated like I’m doing something to cause my own symptoms.

Or the “you’re too young to be dealing with that”.

Oh, ok then, I guess I’m not.

I’m still not really able to sit on the couch without getting the vertigo and chest discomfort. I’m really not sure what that’s all about. I’m sitting in dining and office chairs most of the time now. Some days are better than others. It’s been hard on my body but the pain has been easier to deal with than the vertigo. By nighttime I’m pretty achy. It’s hard to have the endurance to sit at a table when you’re sleep deprived, too. I feel like I’m pushing myself every day now. Days feel really long sometimes.

Veering off into a completely different direction, I am pretty disappointed with the changes in social media lately. As sad as it sounds, they are the bulk of my social life, and the new algorithms that control who and how I interact with people have made things like facebook basically useless. The facebook algorithm is designed so that the less you interact with someone, the less you see of their posts. But then what ends up happening is you never see a person’s posts so you never interact with them. It’s a shitty catch-22 algorithm. So I know my friends aren’t ignoring me, they just aren’t seeing my shit, and vice-versa. Twitter is starting to do the same thing, and they both throw in a lot of advertising, which is annoying. I also am annoyed from seeing 2-day-old posts at the top of my news feed, and seeing a post again just because someone commented on it. I’m starting to fail to see the point in using facebook. I know there are other social media apps and stuff but I don’t have a smartphone and I am limited to what my computer or my iPod 4 can do. I like sharing my art and my stupid thoughts and my blogs with people. It makes me feel normal.

Speaking of art… I had a week where I did quite a few digital drawings, still life stuff. I got sick and I got off track a little bit but I’ll get back to it. I was learning about my camera the other day. I haven’t played around with the settings much and I was having fun with that. Today I downloaded Blender to see if I still have any 3D modeling skills intact. It all still makes sense, I just have to practice it a little bit. I totally bombed this tutorial on Youtube, but probably because I was trying to do it with a headache. There are quite a few computer programs I want to try. I was looking at Maya, and I am already familiar with 3D Studio Max. I also want to try Sketchbook Pro and probably Photoshop for drawing. I also would love to get my hands on some music software like FL Studio. I can use my piano keyboard as a midi controller and I know I’d have a ball with that.

Last night the fog rolled in really thick and it smelled like the beach. It was pretty much my favorite.

Vertigo and stuff #lupus

I’ve been getting vertigo and shortness of breath from sitting on my couch.

I agree, it sounds ridiculous.

It must be a positional/blood flow thing. Like when you get a random boner, only vertigo.

Luckily I’ve never had a random boner.

I’ve been sitting in a chair at the table for most of the day to avoid it. But I reach a point where I can’t sit there, either. My neck and my back couldn’t take it anymore so I went to lie down on my side on the couch for a bit, and sure enough, the room is now spinning. I also feel like someone is sitting on my chest. I’m having more shortness of breath when I am trying to fall asleep too.

I wish my ass was less bony.

This has been going on for a week or more. It’s just this month’s weird problem. I get a new one every month. It’s like a ‘Weird Problem of the Month’ club. This subscription sucks.

I saw a specialist for pain and brain fog a few weeks ago. I’ll be nice and just say he wasn’t a good match. I have appointments with a couple more, my mom and I figured we might as well shop around a bit for this type of specialist considering it’s a tricky subject and the specialist needs to know what they’re doing.

I have an appointment with a gyno soon, because unfortunately the chronic pain and skin inflammation that goes with autoimmune disease can affect anywhere. Also, having Addison’s Disease, my hormone levels could be unbalanced. My periods every month make my lupus worse. I hate knowing that week is coming. I hate having that setback all the time. I hate the extra migraines and the ‘Weird Problem of the Month’. I hate the extra stomach pain, and the extra pain in general. I hate the extra fatigue, and the lack of sleep, and the cramps. I wish there was a different word for cramps, because the word ‘cramp’ doesn’t do the ‘barbed-wire-wrapped-around-my-uterus’ feeling justice.

Oops. TMI.

Right now I’m shivering for no reason. I’m not cold, because it’s hot in my house right now. Just another weird symptom I’ve been having lately. It makes my muscles hurt. We broke a record in heat today. “Winter” LOL.

I did some art today. I’ve had a bit more energy in the morning for the past couple days. When I am able to sleep until 7 it seems like I do better with energy. But when I sleep until 4, and then I’m up for 3 hours and then have to go back to bed, I usually feel shitty.

Thursday is Humira day.

Well, I managed to mention butts, lady parts, and boners in today’s blog. I should probably get off the computer now.

 

 

 

Tomorrow and energy and stuff #lupus

My rheumatologist told me last week that we are doing everything we can safely do to control inflammation and the pain caused by it. The next step is to try to control the pain not caused by inflammation, and also my brain fog issues. I’m seeing a new specialist for those things tomorrow. I’m not a fan of going to see a new doctor. It always makes me nervous.

I’m still struggling with energy. It doesn’t help that I can’t seem to get a decent night’s sleep. I woke up every hour last night, mostly because I pee too much. I feel like a sloth today. I’m having some shortness of breath that isn’t helping either. I’m having some headaches that come with vertigo and feeling lightheaded. They make my neck hurt too. I’ve had them before. They’re not too bad this time but they make it really hard to concentrate. They make the brain fog a lot worse. They get worse when I look down for too long. Sometimes they make my muscles feel weak, and they make my teeth hurt. They’re weird headaches and they feel awful. I’m pretty sure they are vestibular migraines. When I can rid myself of the headache/neck ache, all the other weird symptoms go away too.

I’m taking more vitamins. I went up on my iron and started taking D3 softgels instead of tablets. They seem more effective for some reason. I get more achy at night when I don’t have enough D3.

I’m backing off on the ibuprofen. Mostly just to see what happens.

My BP seemed a bit on the low side today. I’m gonna try going back to my usual dose of Florinef. Maybe it will help my energy. It might give me more headaches. I don’t know. It’s a medical Rubix Cube.

I had a minor stomach flu on Monday. It wasn’t really that bad but I still don’t feel 100% yet. Today I would normally do my Humira shot but I’m gonna wait an extra day to make sure I’m over it. I’m kinda too tired to deal with stabbing myself today anyway. It’s an easy process but the injector pen is painful.

I’ve been using restasis eye drops for a few years. My eyes used to feel so sticky and dry. I’m taking a break from them now. I feel like every time I use them they make my eye feel irritated all day, which seems counter-productive. I’m using Pazeo allergy eye drops now and they seem to be taking care of the irritation and my eyes don’t seem to feel dry even though I stopped the restasis. I’m still not wearing contact lenses that much but I am able to actually wear them when I want to. Mostly I’m just too lazy to put them in.

 

Humira update #lupus

 

I’ve had about 6 or 7 humira shots. I am noticing some changes, both good and bad. I’m due for my next one tomorrow.

To summarize, so far it has helped some of my lower GI pain and symptoms. The relief there was actually immediate. I lost some bloat and I am more regular now. At one point my stomach was hurting so often I didn’t really want to leave the house. I still get some  flares (like today) and have days where things aren’t moving along but it’s not every day anymore.

On the flipside, I am more tired. I’m having a hard time finding the energy to do daily things. I’m getting short of breath pretty easily. Any bit of exercise I am able to do makes me pretty tired and sore. My body temperature is up and down, but never comfortable. I’m pretty sensitive to heat, even when I have the chills. My fingers and toes are going numb and turning blue and white. My face turns red, and I’m waking up in the night feeling too hot and feeling like my feet are on fire. My overall pain level is the same. I’m a bit more headachey. The morning stiffness lasts all day and clothes feel painful sometimes. I’m getting bad cramps in my hands and feet, and sometimes in my back. My throat is sore, my nose has sores in it, my mouth hurts, and my lymph nodes in my neck and underarms are tender. My periods are off schedule, which is really strange for me. My focus is terrible, and my memory sucks. My gastritis is painful and my acid reflux is obnoxious. Not much has changed, some symptoms are actually worse, or have returned.

I’m not expecting the Humira to help everything. I was hoping for less joint and muscle pain and a little more energy. I think that’s a realistic expectation. I really wasn’t expecting to be more tired. Sometimes I’m “too tired to move” tired, and sleeping doesn’t make it better. I was hoping I’d adjust to the humira and the fatigue from it would wear off. I’m still not sure if it’s the treatment for me. It’s helped so much with my lower GI pain, and that would be hard relief to give up if I were to switch treatments. I just wonder if there is something that would help a little of everything.

I could only sleep on my left side last night. I woke up pretty achy this morning. I had a nice reprieve from my nighttime breathing problems, but now it’s back and this time it’s triggered by rolling over at night. It must be related to my vasculopathy, and rolling over changes my blood flow or something. I’m still doing the breathing exercises. They haven’t helped much for the past few nights. Sometimes I am too tired to do them. Sometimes they make my hernia hurt. They’re not very fun.

Vasculopathy wasn’t even a google-able word a year ago. Now they’re doing research on it and there’s information online about it, which is pretty great.

Magnesium has been giving me a headache so I’m taking a little break from that. I bumped my vitamin D3 back up to 1600 IU. I’m still taking slow release iron. I started taking 7.25mg DHEA. I have low testosterone and DHEA is supposed to help. So far I don’t really notice anything besides oily skin. My endocrinologst wanted me to start at 10mg but that dose was giving me a headache. I can probably work my way up to it.

I’m trying to do some walking when I feel up to it. Aside from the El Nino rain, the weather has been more forgiving lately. Sometimes the cold air makes me stiff, but it’s still easier to manage than the heat. I saw an RA article once that had some suggestions and one of them said “exercise when practical”. Putting it that way makes so much sense. Depending on the weather and how you feel, sometimes it’s just not practical to exercise because it could just end up hurting you. People with autoimmune and autoinflammatory diseases can’t just push themselves through stuff like healthy people.

I’m drawing more lately. My hands are stiff and it’s not always easy to make clean or straight lines but I’m managing to work around it. I can also draw digitally now since I have a Wacom tablet. It has taken the stress out of set up and clean up. It has also taken some of the discomfort out of sitting and drawing as well. I can just sit, draw, and delete. It’s a good warm up too and I’m hoping it will strengthen my hands. I lost my confidence in it for a while but I’m starting to feel better about it now. I was getting to caught up in the idea of the end result and not really enjoying the process. I also think I had some amount of anxiety over doing it because I know it causes pain. I can work around that a little better now.

My sleep schedule is still weird. I’m up til midnight or 1 and I sleep till 11am. I don’t think it’s unusual for a person with adrenal insufficiency to have a schedule like that. I know that when I get up early I feel awful all day. Luckily I have the freedom to sleep when I need to.

Humira and stuff #lupus

I took a break from writing, and wordpress has a whole new interface. I really wish websites would stop changing things around. It’s really annoying to have to re-learn how to use something all the time.

I’ve been on the Humira for a little over a month. I was a week late for my last injection because of insurance/pharmacy and because I didn’t ask my doctor for another sample when I should have. I felt some of my stomach pain come back. After I did another shot it seemed to get better again.  I’ve felt more tired while on Humira, like “too tired to shower” tired. I still manage to shower, but it’s been exhausting. When I get up in the morning I feel like I didn’t sleep, and I’m dragging ass all day. I’m hoping it’s just an adjustment period.

My focus has been horrible. I think that’s why I didn’t write for a while. I feel like I don’t have two thoughts to rub together. I could stare at the wall and be fine with it.

My Raynaud’s is in a flare. I don’t really know what made it go away, to be honest. I think between it being 80 degrees outside and having a fever all the time, my hands and feet just weren’t getting spasms. It’s been a bit cold here lately. Humira has made me have less fevers, and sometimes the chills, so my fingers and toes are back to being painfully numb and blue.

My period was late this month. I noticed more recently that it seems to happen every 30 days now instead of every 28, but I probably didn’t get it until the 33rd day. I figured I was going to skip one, but then it showed up. I’ve been headachey but no where near what it was even a year ago. Tylenol actually helps, which is a first for me.

My body temperature has been a roller coaster. I’m either too hot or freezing, I can’t seem to get comfortable. I get the shivers randomly, which is a lot of fun for my muscles. I am enjoying the break from being to hot all the time, but being cold makes my body hurt too. The return of the Raynaud’s has made my hands and feet ache a lot. My joints are really stiff. I’ve been getting joint pain in my jaw and my neck is giving me some vertigo again.

Everything checks out at the cardiologist and pulmonologist. My rheumatologist said that I am most likely dealing with vasculopathy, which is a new area of study in the medical world. It’s basically like having raynaud’s in your whole body. Your blood vessels spasm and you get short of breath or your heart pounds. When it happens in your brain it gives you the brain fog. He wanted me to look into a clinic that teaches breathing exercises that can temporarily un-spasm your blood vessels. Such places would be minfulness or biofeedback, and can be covered by insurance. I’m trying to find a place that isn’t shady, since it’s alternative medicine. It’s hard to find anything in my county that’s not a sham. If I can’t find something I’ll probably look into books or dvds on breathing exercises, or something. I don’t know.

The vasculopathy is difficult because every time I do something that changes my blood pressure, like eating, or standing up, or moving around, my chest gets really tight. It’s really uncomfortable. I feel like I can’t get any air. It’s probably also the cause of my nighttime breathing problems, which are made worse by certain medications.

My rheumatologist did show me one breathing exercise. You have to do it for 3 minutes, which is really tiring. I’m gonna have to work my way up to 3 minutes. To say it’s aerobic would be redundant, but it just is. It’s a lot of work to breathe weird for 3 minutes. I’m gonna keep trying. It gives me a headache but since my headaches aren’t so bad these days, I’d rather deal with that then feel like I can’t breathe.

The humira shots hurt a lot. I’m using the injector pen. I tried icing my leg first, that seemed to help. I’m glad they’re twice a month and not every week. I could switch to syringes but I like the simplicity of the auto injector I guess.

I’ve been pretty tired but I’ve been staying up late. It’s like I’m too tired to go to bed. Lame.

My cat yells at me every night because bed time is her favorite time.